An Episcopal (Anglican) Chaplain in the Saint Luke's Health System of Kansas City, reflecting on work and faith and life. NOTA BENE: my opinions are my own and do not represent the Episcopal Church or the Saint Luke's Health System.

Wednesday, January 20, 2010

Please Dr. Gupta, I Don't Want to Go, Part 2

Let me continue my reflections on the book Cheating Death by Dr. Sanjay Gupta.

I have written on my concerns about Cheating Death as medical journalism. In addition to those concerns, there are other issues raised by this book.

Specifically, there are ethical issues to address. Some of these are raised and acknowledged by Dr. Gupta himself. Another is related to issues he raises, and to the shortcomings once again of medical journalism.

Late in the book Dr. Gupta raises the issues inherent in doing research in resuscitation, including but not limited to CPR. One could almost say that there is no ethical way to do the normal sorts of medical research with relations to CPR (almost, but not quite). That is because we do CPR for therapeutic reasons. We do CPR to save lives, and so the ethics of care guide our decisions. That means, among other things, that we don’t withhold care or treatment, nor do we in general choose unproven techniques. Of course, those are precisely what we do in much of our research. We might withhold therapy to show that a new treatment is better than no treatment; or we might choose an experimental therapy to compare to a proven therapy. The thing is, the greater the risk to the patient either of injury or failure, the less likely we are to take risks. And when we’re doing CPR it’s because the risks to the patient are as high as they get. So, it can be very hard to do research on resuscitation.

It’s not impossible. Before my current position, I served for several years in a major medical center where we did research on CPR. In fact I served in the Institutional Review Board (IRB) for Human Subjects Research. My role was to address issues of ethics and patient rights, and we worked long and hard to find ways that we could do CPR research, making small, incremental changes to our standard of care over time (and early on the physicians involved were inclined to think I was opposed to research, which was far from true). There are also, of course, retrospective studies, looking at what happened with individual patients after the fact. However, retrospective studies can only tell us so much, and to change standard of care sooner or later we have to try (and study) something new.

So, for Dr. Gupta, whose book is about new and not yet accepted therapies for patients in extreme circumstances, is acutely aware of the difficulties of research. And on this issue, I think he has a point. These new therapies show promise, but the only way for them to move from “promising” to “accepted” to “standard of care” is for physicians to use them, and report on the consequences of their use – which is to say, to do research. I don’t think that Dr. Gupta would really want us to be hasty in bringing new procedures or new medications to practice. At the same time, I acknowledge and appreciate his concerns, not to say frustrations, with the difficulties involved in making progress in care in extreme circumstances.

Another issue raised in the book is more basic: what do we mean by “death?” Now, this is something of a soapbox for me, if not a hobby horse (look it up). I keep returning to the point that, as I say often enough, “Dead means that you don’t come back.” However, the book does note that this is something of an issue in health care. That is, as we find new techniques that help more folks survive at the end of life (or, as the book also notes, at the very beginning), we change the criteria by which we identify a patient as “dying.”

It’s worth noting that in the book Dr. Gupta is a bit vague on the definition of death. At the blog GeriPals, Eric Widera notes what he calls the book’s “biggest flaw – the complete lack of consistency when using the term ‘death’.” However, I think I can say that he is consistent that in all his concerns, whether discussing “death” or why we might question the value of the diagnosis of “persistent vegetative state,” are with neurologic death. Even his chapter focused on cancer care addresses a primary tumor of the brain. While various chapters focus on various medical diagnoses leading to death, the death they lead to is neurologic death, whether brain death or unrecoverable brain injury.

There’s a logic to this, of course. For a variety of reasons, brain death has been an important legal concept. It reflects an understanding that life is about personhood, identified in personality, and not just biologic function. Even without support, in the right circumstances heart rate and breathing can go on for some time with only the limited functions of the brain stem; and with nutrition and fluids, for quite a long time. However, without the functions of the frontal and midbrains we do not show any personality – no interaction, no choosing, not emotions. And if there’s no personality expressed, and no expectation that the injury can be healed, why not understand that the person is dead?

And we’ve built a number of other moral decisions on that concept. Our understandings of “death with dignity,” and of families using substituted judgement to withdraw life support, are premised on the idea that death is about personhood and personality, and so once that it gone it’s also appropriate to forego therapies that will sustain pulse and respiration. In most cases our practices of organ donation depend on it (notwithstanding living donors of kidneys and even of portions of livers). Without the legal concept of brain death, these practices go by the board.

This is not to say that we shouldn’t be using new tools to learn more about injured brains. The functional MRI studies that suggest some patients in comas are more aware and responsive than we have previously known may well help future patients we can’t help now.

However, coma is not brain death. “Dead” continues to mean you don’t come back, whether because your brain won’t function, or because your other organs won’t.

And that distinction is also important. While we might focus these days on neurologic death, the brain isn’t the only organ we can’t survive without. Loss of heart or lungs will certainly cause death, but so will loss of liver or pancreas. Like neurologic injuries, we can treat injuries to those other organs; but ultimately we can’t live without any of them, and without any one of them we will die.

So, the book raises an important issue (recognized by Sanjay Gupta the physician as well) in changes in our understandings of dying (and, for that matter, living). However, it doesn’t really change the fact that we die. Gupta has written about “cheating death,” but even he knows that this means using new and better techniques to delay death, and helping patients recover whom we could not help before. We can find better ways to do CPR, and discover more going on than we knew in injured brains. What we can’t do is really cheat death. The mortality rate of the human condition is 100%. For all the unexpected recoveries we celebrate, sooner or later we will all be dead; and dead means you don’t come back.